Day 9

Yesterday proved to be a day of ups and downs. Actually, that pretty much describes almost any day here. The highs were Erin's visitors. First, Aunt Colleen visited, and spent the morning hanging out with Erin. Erin continued to be pretty active and very fun to be with. She seemed to be feeling so much better than she did when the PGE was in her. I have previously described PGE as "liquid flu." Colleen went to lunch with us, and we were even able to find someplace other than John Barleycorn to eat. I also neglected to mention that Sheila's other sister Maureen had driven in from St. Charles on Saturday to visit Erin for the second time. Sheila's family has been a great source of support for both of us, and I know Sheila especially appreciates their visits. Erin just seems to like having visitors.

During lunch, I was surprised by a phone call from our best friends, who live in Chevy Chase, MD. Sara informed me that they were on their way in from the airport to see Erin, which was a great surprise. Aunt Sara and Uncle Alex spent the rest of the day with us, hanging with Erin and ourselves. We even were able to sneak out for a quick dinner before they had to head back to the airport for a 9:00 flight. It was a very long day for them, but we so appreciated their visit.

Erin's day medically was all over the board. She was clearly having trouble keeping her oxygen sat levels up. They were dipping into the high 60's at one point. To combat that, it was decided to up her oxygen to 100%, and then add nitric oxide, which serves as a pulmonary vein dilater. She also had yet another echo cardiogram to see what was going on in there. Late in the afternoon, the cardio staff decided that they wanted to draw blood gases from an artery, which would give them a different view on her oxygen sats. We knew it wasn't a fun procedure when they asked us to step out of the room while they performed the stick in her artery. Babies veins are very small and fragile, and baby cardiac patients even more so. It sucks sitting in the hallway knowing your daughter was undergoing something painful. Proving her track record is no fluke, Erin came through it like a champ, ably assisted by her baby crack cocaine concoction known as Sweeties.

I spoke with the resident in the late afternoon about what we do going forward. It had been decided that they wanted these arterial draws every 4 hours, so the question was do they continue to do one-off sticks to get the blood, or do they surgically implant arterial line? The arterial line is very difficult to do, and involves threading the line through the artery. The resident and I agreed that our preference was not to do the line. One fear of putting the line in is that Erin is fairly active, and they worried that the line might not last more than a day.

After dinner, Erin's readings still weren't great. We had intended to really go back and hang with her for an hour, and then head home a little early at 9 pm. Unfortunately, it had been decided that she needed some more blood in order to give her more red cells that could carry oxygen. At the same time, it had also been decided that they needed to put in the arterial line. Once again, we were asked to leave the room while Erin underwent yet one more painful procedure. Sheila and I retreated to the waiting room and tried to watch the Yankees game and not think about what Erin was going through. After about 30 minutes, they came and got us and told us that the procedure had gone very well, and once again, Erin proved that she is tougher than Mom and Dad put together. We stayed with her for awhile afterwards until she was calm and sleepy.

I called at 3 am to see how she was doing. She had one bad episode where Haley couldn't calm her down while drawing her blood gases. Even Mr. Binky wasn't working. The belief is that now that she is off the PGE and feeling better, she is getting hungry and really wants to fill her little belly.

When we arrived early this am, she was awake and alert, but quickly went to sleep holding Sheila's finger. Nurse Julie informed us that Erin had spent a good deal of the night awake, at times calm but at other times crying.

Cardiologist Jeff came by to discuss the situation with us. He has ordered more blood, and yet another echo cardiogram. On the echo, we will be looking to see if her duct has closed off entirely. If it has, then her readings are acceptable, and we will then move to wean her off the nitric oxide and the oxygen. If the duct is still open, then we need to revisit things, think about restarting the liquid flu, and most likely prepare for surgery. I have a call into the head of the neonatal cardiac surgery unit here to discuss what the surgery entails in detail.

Sheila left to go pump, and while she was gone Julie drew blood from the arterial line to test her blood gases, which are still very good. The procedure involves keeping that one arm immobile while the draw takes place. Erin does not like having one arm immobilized, and began to cry heavily. She was rooting around for the pacifier, a sign that she is very hungry. A further sign is that the pacifier is no longer satisfying her. We just couldn't get her calmed down. Rounds were taking place at this time, and the new neonatologist Robin looked Erin over. She promised to meet with the cardiologists and come up with a meal plan. I don't have a lot of hope that will happen soon, however, as I have been pressing for her to eat for several days and meeting with strong resistance. This could prove to be an extremely difficult day. We are also very limited in our ability to hold Erin with the new arterial line. And to top it all off, we were informed that they are on standby for two potential surgical procedures for the premature babies next to us today. Since they are so young and fragile, that would have to take place right her in our ward. I feel so badly for these little babies. They are so small and seem to be fighting so hard. Watching the staff care for them literally every minute of the day is inspirational.

Lastly, Erin lost one of her IV lines during the night. That means that she will have to undergo yet another procedure today to put one in. At this point, Sheila and I are asking the question just how much more can this tough baby take? She's pretty resilient, and hopefully we are nowhere near her limit.